My Rituximab experience with RA and ME

[Nielk]

How are you feeling @Nielk ?

Thanks for checking on me. I have not posted here because unfortunately, I do not have anything positive to report. I have been feeling pretty much the same this past month.

I have an appointment with my Rheumatologist on Monday so I will try to post after that. I guess a decision will have to be made whether to have another go with it at the six months mark.

On the positive side, my RA does not seem to have progressed which is good. The problem is that I know the Doctor would want to wean me off the steroids and I'm not sure this can be done at my present state.

As far as my ME symptoms so far, I do not see any improvements yet.

 

[SDSue]

Thanks for the update, @Nielk. I hope good things come your way soon!

 

[beaker]

Thanks for checking on me. I have not posted here because unfortunately, I do not have anything positive to report. I have been feeling pretty much the same this past month.

I have an appointment with my Rheumatologist on Monday so I will try to post after that. I guess a decision will have to be made whether to have another go with it at the six months mark.

On the positive side, my RA does not seem to have progressed which is good. The problem is that I know the Doctor would want to wean me off the steroids and I'm not sure this can be done at my present state.

As far as my ME symptoms so far, I do not see any improvements yet.

Went back to check -- you are about 3 months out ?
Hoping it will kick in soon for you.

 

[DanME]

Hi @Nielk,

don't give up hope!! I ve read the Rituximab study (2011) from Fluge and Mella again and most responders (9 from 10) had a late (!) response pattern.

"In the present study, only one out of 10 responders in the Rituximab group had an ‘‘early’’ response pattern with the major response starting from 2 months, while the remaining nine responded later, starting to improve from between 3–7 months after treatment."

"Rituximab treatment with subsequent B-cell depletion results in major responses of CFS related symptoms, with responses starting to occur between 2 and 7 months after intervention, and with response durations of 2–15 months and in addition two patients with no relapse."

Here are the exact response times (from their graphs), when the patients started to feel a change in symptoms. 20 weeks, 17 weeks, 24 weeks, 20 weeks, 12 weeks, 4 weeks, 20 weeks, 8-12 weeks (hard to say from the graph alone), 6 weeks, 12 weeks.

I count 3 early responders and 7 late responders. But Fluge and Mella counted only a major response and not the start of feeling a little better. The major response lagged even more behind.

The patients got only 2 infusions two weeks apart and no Mtx. Nothing more.

As far as I can see you are in week 11. So there is still plenty of time for Rituximab to work.

 

[alex3619]

If the price falls by 50-70%, and we know for sure that it works on 70% I think many would pay out of their own pocket.

Yes. It would be worth it if you are a responder and can afford it.

 

[alex3619]

It is not proven we are either autoimmune or not autoimmune. Either is possible, hence the research must move forward with both in mind. Autoinflammatory is also an important option. However we do often have generalized markers of autoimmunity. One of them is elevated sIL2r or soluble interleukin-2 receptor. I have oodles of the stuff. This does not prove autoimmunity, but it is suggestive. I know there are other general markers too, but I can't recall them just now.

 

[DanME]

Yes, we definitely can expect a drop in prices to around 1000-1500$ per infusion. Still expensive, but maybe affordable, if we just need it every 6 month.

Hm, the total depletion of B-Cells definitely stops something in half of the patients. Maybe the productions of autoantibodies (true autoimmunity), or a hypersensitized immunity loop (autoinflammatory), or an excessive production of microglia or all three at the same time. I go for true autoimmunity. But it is just speculation at this point.

 

[deleder2k]

How how expensive is Rituximab really? 500 mg is priced at €1400, £1130, or $1820 in Norway. Dose given in the Rituximab study was 500 mg/m2. According to @Jonathan Edwards this "translates" to 500-700 mg per infusion (maybe someone knows for sure). If one need 500mg, the cost of 4 doses are $7280. Infusion at day 0, day 14, after 3 months, and after one 6 months. One will know if it works after 2-7 months.

 

[Helen]

IMO it would be cheap to get people back to life and work for the cost of $ 7280 for the first year.

 

[DanME]

I think it depends on the country. In Germany 500mg cost 2044€ and 100mg 844€. Probably hospitals get it cheaper. And usually prices in the US are higher.

So in total you would need 15000€ for four infusions at 700mg (in Germany). A drop in prices would be much appreciated. or recognition by the government and my lovely public health insurance pays for it.

 

[deleder2k]

IMO it would be cheap to get people back to life and work for the cost of $ 7280 for the first year.

Absolutely. I really don't think theres any doubt about that. The problem is that governments in some countries are slow. I hope that someone can treat patients when we know the preliminary results from the phase 3 study in Norway. In a year the researchers know how many who are benefitting from Rituximab - and who's not. I hope that information will be made available before the study is published (probably in 2016 or 2017)

 

[alex3619]

I would drain my bank account to try Rituximab for the first year if the phase 3 clinical trials are successful. However if someone cannot afford at least 9 months of treatment then it is not worth even starting. If its shown to work we will need to advocate for government assistance. The cost of treatment for me is less than keeping me on a pension.

 

[DanME]

I doubt that. I think, Fluge and Mella want to make their study as watertight as possible and publish only, if they are completely finished and sure about the results.
But we can do something, we have to create awareness and rise the pressure on the he officials. That is our job.

By the way we start to hijack this thread again. Maybe we should move the discussion to another thread.

 

[Nielk]

It is fine to keep talking here about this. It is all about Rituximab and I am certainly very interested in all this.

 

[Nielk]

I had my appointment yesterday with my Rheumatologist. Even though she is not happy with my lack of progress I was able to convince her to stay the the course for the time being.

She wants to add another medication to my mix but took some blood work first to make sure that it would be safe for me. In addition, she doubled my prednisolone dosage for the time being, hoping that it would help.

 

[NK17]

I'm very happy to hear from @Nielk that the rheumatologist is willing to keep you on the treatment.
Can you clarify if your doctor is not happy about Rituximab in regards to your RA or your ME? You might have already explained that, sorry if I ask again .
I personally think it is a bit premature to throw the sponge, we should wait for your immune response to kick in later.
I keep my fingers crossed for you and wait to hear some good news of an improvement!

 

[DanME]

I had my appointment yesterday with my Rheumatologist. Even though she is not happy with my lack of progress I was able to convince her to stay the the course for the time being.

She wants to add another medication to my mix but took some blood work first to make sure that it would be safe for me. In addition, she doubled my prednisolone dosage for the time being, hoping that it would help.

If the current regime of Fluge and Mella is 0, 2 weeks, 3 month, 6 month, 10 month, 15 month, wouldn't it be wise to mimic that in your case? I remember your regime is 0, 2 weeks, 6 month with the addition of Mtx and Prednisolone. But I am not sure, if it would make a difference.

 

[DanME]

I'm very happy to hear from @Nielk that the rheumatologist is willing to keep you on the treatment.
Can you clarify if your doctor is not happy about Rituximab in regards to your RA or your ME? You might have already explained that, sorry if I ask again .
I personally think it is a bit premature to throw the sponge, we should wait for your immune response to kick in later.
I keep my fingers crossed for you and wait to hear some good news of an improvement!

Definitely. There is still plenty of time for the antibodies to fade out (if the theory is correct).

 

[NK17]

FYI Dr. Carlo-Stella an immunologist from Italy (one of the co-signatories of the 2011 ICC on ME, as well as a well published author, researcher in the field, now in private practice in Pavia, near Milan), has personally told me that after reading @Jonathan Edwards intervention at the end of this past May IiME conference in London and based on her own genetic studies on Italian cohort, that at this point in time a Rituximab trial/intervention is very much justified, since a good percentage of cases seem to fit the "autoimmune" quality of other AI disorders.

 

[Kati]

My dosage of Rituxan was 1g, and the price varies, just like the stock market. 6000-6800$ a dose is where it's been.

In general people have a body surface area 1.7-2.2